The Difficulty of Balancing Activity and Rest-and What I’m Doing About It

If I had a hundred dollars for each time I’ve heard staying active is the best way to preserve motor function, I’d be among the top 20 percent wealthiest people with MS. (It would be hard to out-earn Jack Osbourne and Montel Williams, but my piggy bank would at least take up an entire ballroom in Downton Abbey.)

Likewise, if I had another hundred for each time I’ve heard that rest is even more important than activity, I’d have enough Ben Franklins to buy the biggest, most tech-advanced adjustable bed known to contemporary bed-dom—and have enough left over to buy one for all of you, too. Alas, it is not to be. I missed the gravy train. I’m poor as a Monroe County muskrat, but that’s not a big deal. No learning curve there.

What I need to learn is how to balance activity and rest. Problem is, all the money in Mozambique couldn’t make me get off my tush more often. I don’t know about you, but when I’m still in a stupor an hour after getting up in the morning, you couldn’t dangle enough thousand-dollar bills in front of my face to get me out of the La-Z-Boy and onto the strider. So what that my tush is getting wider and my muscles are weakening! I can always buy larger clothes and a recliner that propels me out of the chair and into a standing position without my having to flex one centimeter of abdominal muscle. Why, with all the assistive technology available today, I can live a quality life whatever my degree of disability. But let’s say I’ve decided I want to stand up and walk around under my own steam for as long as I can. Where do I go for inspiration?

A little effort goes a long way.

Inspiration is different for everyone. An infusion of information lights my inner fire, so I find internet research very helpful. The NMSS has PDF files you can download that illustrate resistance and stretching exercises. There are also many journal articles that explain the benefits of light to moderate exercise, even if it’s only 15 minutes three times a week. I’ve printed out the PDF file. Now I have to actually read it and do the reps. Maybe tomorrow.

Zero-impact strider.

It’s small and compact enough to sit in my living room to one side of the television. Twice a month, I jump on it in a fit of guilt and swing away. I can feel my abs get tighter after only two 5-minute sessions on the strider. My posture instantly improves as does my upper body strength. And because my arms pull on bars that swing my legs forward and aft without taking steps, it doesn’t tire my legs or worsen the foot drop like a treadmill or stepper would.

A short walk.

Taking a short walk outside gives me lots of benefits but is also more tiring. My usual route is over uneven grassy terrain and takes only seven minutes. It’s a workout for my weak, discombobulated feet, ankles, thighs, hips and lower back. When I get back home, I feel like a marionette with the strings cut as I collapse on the recliner. But I do recover after a short while.

Naps.

Afternoons for 15-30 minutes, repeat as necessary. Napping doesn’t seem to affect my ability to fall asleep at night. But my need for naps decreases or disappears all together if I get 8-10 hours of uninterrupted nighttime slumber.

Continuing motivation.

Progress is its own reward—and also motivates me to keep it up. But guess what throws an Allen wrench into the works? Fatigue. The mind is willing but a rolling brain fog gathers much moss, swathing noble thoughts of physical exertion in emerald green forgetfulness. Yet I persist. One must.

Do I want a buddy?

Well, yes and no. I very much like the thought of it, imagining someone softly knocking at my door at 9 a.m. every day and asking me if I’d like to take a brief promenade around the building. I might respond with yes, what a lovely day for it, we can see if the robin’s eggs have hatched yet. Or, are you freaking kidding me? I’m so dizzy my butt missed the toilet not ten minutes ago! On second thought, that dreaded knock would probably stress me into a pseudoexacerbation, or at least a bad mood. So, no buddy–unless it’s Jeeves bringing me espresso and a bloody Mary.

Rest and sleep are two different things.

Sleep occurs at night (one hopes), which will last at least 8 hours if there is the perfect storm of cool, moving air near my face and feet, a lack of pain, spasms and stiffness, and the white noise of a fan at the foot of my bed. Easy peasy? Not yet. I might ask Jeeves to chloroform me every night around 11:30.

Rest is something I strive to interrupt in regular intervals of 30 minutes by getting out of the recliner and walking to the desktop or kitchen or bathroom. If I sit in the chair for two hours without moving, my legs will seize up like the Tin Man in a rainstorm. No magic oil can here. I’ll just stiffly fall over like a statue onto cobblestones and have to wait for the coroner to find my shattered remains.

I wish I could tell you I pulled myself together and found a plan and a pace to follow with which I’m fully compliant. Maybe someday, I think I’ve got the right ideas, it’s just that I lack discipline and that makes me feel like a failure. On the other hand, I didn’t think I could quit smoking, but I did. That was 14 months ago and I’m still smoke-free. So it’s possible that a year from now I’ll have developed a healthier, more active lifestyle, too. I do like the thought of it. You can help me with it if you’d like. Just please promise me you won’t knock on my door at 9 a.m. every morning and ask if I’m up to it.

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Ii’ve always loved swimming so I’ve adapted my swimming to what my body feels good with now and swim every morning at 8:00. I’m totally addicted to it. A day without swimming ia a wasted day!. Find something you REALLY, REALLY love to do and get up early when you have some NRG and do it! You’ll feel better spiritually and physically !

I love your humor and the article! I know I need to exercise to keep my strength up but I really can’t bring myself to do. Once in a while I go to the fitness place and I don’t want to and walk the track for years are used to run the track but can’t do that anymore or else I’ll be peeing on the floor!I’ve never been great at an exercise except for about eight years when I did it and then I stopped and gave way to the computer world. That was in 1984 and that’s when I stopped exercising. I’m not a napper never have been. I stay up late and I get up late. Every day I swear to myself to get up and go walking or go to the gym and hit the bicycles at least they have screens now I can watch TV or follow a path. Just getting that shelf outside the door is my biggest lack of motivation.

Kim, You hit the nail on the head !! I am in Therapy twice a week now due to a minor accident and just doing that exhausts me for the rest of the day (not counting the fact I am 70 now). My mind says I am not over 50 when I felt great, but my body says no. By the way Congratulations on being smoke-free!!!! The hardest thing I have ever done. That was in 1972. What I say to myself is “there are many people in this world with many more problems. So I thank God each day for what I have! I think he gives back two-fold”
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Nanny to 4, thank you for your comments. I hope therapy is helping you. And congrats to you too for quitting smoking. I feel as though I can do most anything I set my mind to because I tackled the most difficult addiction there is. Take care. –Kim

I may be beating a dead horse here, but may I suggest … yoga? It really helps reduce my muscle spacicity, and improves my core strength. (Which is all I have to keep me upright since I can’t feel/control my legs.) Any yoga teacher worth their stuffing will instruct you to pay attention to what your body is capable of each day, and ONLY do that which you can without making things worse. That means some days I can do push ups, lunges, and back bends…. some days I can only lay on my back with my legs up the wall. Both are therapeutic for so many of my symptoms, and give me the emotional boost of having done something good for myself. I would encourage anyone at any stage of disease progression to consider a gentle yoga practice and at the very least learn how to improve their health by learning to breathe mindfully.

This is a great suggestion, JAWilson! While any person should consult with their physician before starting a new exercise program, Yoga can be a wonderful and adaptive form of exercise that can accommodate almost any individual’s needs and limitations. I am glad it’s been so beneficial for you. Thank you for sharing! Best, Erin, MultipleSclerosis.net Team Member.

2015: I’m 44 years old, 125 pounds, crazy about fitness and in the process of becoming certified to teach Insanity and P90 X in the gym,..I could run circles around many of my peers ….daily gym workout or 6 mile run to burn 600 calories then off to take care of my mom/wife duties. Busy busy busy and feeling great…..then came the tap on the shoulder that we all have known. Something was wrong…crazy hand tingling but I just kept working out while waiting on the answers from doctors…..fast forward to today- I have slowed WAY down and not by choice….I force myself to get up and move- go to the gym because my friends are there, but I have to really adjust the workout and an hour later I’m exhausted. This has been the WORST part of my diagnosis …it has take away the one thing I really loved doing every day and what I was looking forward to -teaching fitness classes…..it’s been hard to make myself stop when I’m tired, but I pay the price if I don’t . My left side is weaker, my core not as strong, but I still move 5 to 6 days a week. I pray that I can maintain what I have, but we all know this disease is a crap shoot . Thank you for putting a realistic touch on exercise and this disease. I’m thankful I was crazy fit when I was diagnosed because I don’t know what I would be like today .

This is the problem I have.
I lay awake in bed every night unable to fall asleep.
I just came off about a month of this, When I google this, all I get is stories about how important it is for MS’ers to get at least 8 hours of sleep every night. Thanks for the heads up.

Then, fast forward to now. All I can do is sleep. Saturday night I slept for 10 hours straight! Yay! Then all I could do yesterday was sleep. I would doze off at the drop of a hat not even knowing I was tired. It’s not that I’m tired, I’m just exhausted.

There’s no gray area on this. I’m either chronically asleep or chronically awake. What a life!

I need to mention another suggestion, my aunt who had MS at the age of 70 was using a walker to move around. Someone from her church gave her a gift certificate to a gym and a private trainer. After a few months she was able to give up her walker and get around with a cane. Potter

I try to do a hours worth of stretches 4 times a week, I got the exercises from a physical therapist when I was first diagnosed. If I skip them too many days, my legs and ankles start cramping. They aren’t hard to do, but sometimes I have appts and get to busy or I have a cold. Potter

Mascha, I’m so glad you enjoyed my article. I hope you don’t beat yourself up about feeling too fatigued to exercise. I always count doing errands as exercise anyway, so you’re doing just fine in book!

I should have your problem with money but because I was cheated out of it and then had Identity Theft money is a disease my wife and I can’t catch any more. You already had great suggestions but I want to add my own input after fighting this disease since 1985. I found if I take 20 minute naps it helps. On the Internet it stated in taking short naps you won’t get into the deep sleep as you would at night and I find it refreshing. I friend I went to college with who has to doctor degrees taught me an easy meditation technique which actually helped. If you ever have tried it you will know what I mean and he told me several ways with a candle and plain water, but I found it easier to just concentrate on breathing. I breath in through my nose until I feel it on the top of my head then blow out through my mouth. I found by doing this It usually calms me down and at night before I notice I am sleeping. I also take benedryl at night because I started getting more allergies after taking the MS medication. The MS won the inning in 2000 after an ostomy surgery so I haven’t worked a full time job since then. To get me motivated to walk my wife purchased for my birthday another German Shepherd puppy. He needs walked and exercised and i do my best to walk him daily. After having to stop the new Ocrevus chemo drug my body is revolting on me and I had to find a dog walker for the pup. I made a promise to myself I will be back to talking him on walks after the first of the year, but just having him is the push I needed to get myself active again. I have a bike, Nordic track elliptical and an bowflex to workout on but just getting out and training my new puppy is relaxing for me even when. He doesn’t listen. I played rugby in college so I was in great shape and I am only half the person I was before. Physical Therapy helps but it is a mind set and confidence that every person has to get in order to keep their own MS in check. Everyone needs to find what exercise helps then and even though my brain and spine are damaged to where I shouldn’t be able to walk I have defied odds and forced myself to keep moving no matter how bad it hurts. I have mastered the tuck and roll when I fall and I may have some bruises but I haven’t broke my arms or fingers when I fall. I just won’t give in and even though some day the MS like my neurologist told me I may go to bed being able to walk and when I wake up I may be totally handicapped I will still try hard to get myself moving again. I know I got off center in my conversation but find what makes you feel good so that you enjoy doing it and it won’t feel like you are working out at all.